Brazilian Conference Brings Others With Condition Forward

Published: April 15, 2014

By Shayne Schroeder

And then there were 10.

When Kelly Rogers went to South America and the University of Brasília last year to attend the first-ever international conference on congenital aglossia, she was only one of two known individuals living with that condition—where a person is born without a tongue. Today, based strictly on the exposure the conference provided, another eight individuals with congenital aglossia have come forward.

“As a result of our conference, we’ve quadrupled the number of known living people with congenital aglossia and we’re a team now, so we’re all over the world as a team trying to understand this condition,” said Betty McMicken, an associate professor of Communicative Disorders at CSULB and an internationally recognized speech pathologist.

Still, she doesn’t expect the numbers to dramatically increase for a couple of simple reasons.

“Individuals with this condition don’t thrive because a lot of these children have swallowing problems and they become malnourished,” said McMicken. “There’s many examples in the literature of children with congenital aglossia dying so I doubt that there will be many more coming forward.”

Today, Rogers and McMicken—who reunited in 2012, some 26 years following an initial patient-therapist consultation—work as a team, co-authoring papers and presenting their findings at various conferences. For 20 hours a week, Rogers volunteers on campus where she hopes to transfer to from Saddleback College in 2015.

“She’s my co-author now and in the past year we’ve had two papers published and one is accepted for publication now so we’re really cranking them out,” said McMicken. “I’m working on a paper with Dr. Wang from Family and Consumer Sciences on taste in the congenital aglossic; I am also working on a paper on swallowing in the congenital aglossic; we are working with speech pathologists and speech scientists from UC Davis, CSU Chico, and USC. It’s a real collaborative effort.”

Rogers presented a paper at the Brazil conference for McMicken, who was recovering from cancer surgery. She was also able to meet up with the only other living individual known to have congenital aglossia at that time, Auristela da Silva, a 23-year-old Brazilian native.

“It was interesting because I was there and I’m someone who has had no surgery or any other intervention,” said Rogers, “yet Auristela has had extensive surgical intervention. She’s a rock star down there. She was so comfortable giving interviews. It was interesting meeting someone who their whole life has said, ‘This is who I am,’ where I was the opposite.”

Still, the media exposure Rogers has gained over the past year or so and, to some extent, the continued acceptance of her condition, has somewhat liberated her.

“I spoke to a lot of members of the media. There was an interview the following day that I did with what is the equivalent of CNN and that was on the news in Brazil,” she said. “I would go back to the hotel at night and turn on the TV and there I was. I was on some sort of news program each day. I was recognized by people; they were kind of staring, which happens from time to time anyway so I just figured ‘Let them look,’ but then they went ‘Americana, Americana’ because they had seen me on television the previous night. That was pretty cool.

PHOTO COURTESY OF KELLY ROGERS

Kelly Rogers (l) and Auristela da Silva.

“I’m definitely more comfortable talking to people about it now,” she added. “It wasn’t something I embraced before. It was something choose not to think about or talk about. I never thought of it in a positive way, but now people are coming forward because of the conference.”

One of those, a mother in Ireland whose son has congenital aglossia, is now one of Rogers’ Facebook friends.

“I think her motivation for contacting me was to ask me, ‘You’re an adult and you’ve lived your whole life with this. How are you? How has your life been?’ And I said ‘I’m fine, I’m good.’ That really seemed to help her a lot. She just wanted to know that her baby boy can have a happy life.”

Along with two children in Ireland and Australia, McMicken noted that eight new clients came forward as a result of the conference, people who had never been treated in South America for congenital aglossia.

“One of the cases that was brought to my attention in Brazil was a man in his forties who had literally never left his house and was living in poverty and pretty much seclusion,” said McMicken. “He is now being treated at the University of Brazilia and is going to have a life. He’s going to undergo surgery and other treatments and it’s all because of this conference and Kelly and Auristela coming out in the press.”

Because of McMicken’s reputation as a speech pathologist as well as her work with Rogers, they have become the go-to people on congenital aglossia.

“I have been inundated with calls and e-mails, not just on aglossia, but on hypo-glossia (small tongue), on deformations of the oral cavity that have to do with speech and swallowing,” said McMicken, who consults nationwide. “Because I am now known as an expert in this area in terms of speaking and swallowing, I usually receive about three inquiries a week.”